Womens Perceptions of the OptOut Approach to HIV Testing During Pregnancy

1
Womens Perceptions of the Opt-Out Approach to
HIV Testing During Pregnancy
Sarah Dolgonos Linda S. Podhurst, Ph.D August
2004
2
Objectives

• To describe the differences between the opt-out
  and opt-in approaches to HIV testing during
  pregnancy
• To present data on the impact of these approaches
  on HIV testing during pregnancy

3
Objectives

• To present data on womens perceptions of HIV
  testing and methods for obtaining consent
• To discuss recommendations and next steps based
  on womens perceptions

4
Prenatal HIV Testing Policies

• Opt-in
• Pre-test counseling and written consent
  specifically for an HIV test
• Opt-out
• Notification that HIV test will be routinely
  performed unless it is refused

5
Background

• 1995
• USPHS recommends HIV counseling for all
  pregnant women and encourages HIV testing
• 1998
• IOM report recommends opt-out approach to HIV
  testing for pregnant women

6
Background

• 2001
• USPHS strengthens recommendation for routine
  HIV testing for pregnant women
• Simplify HIV testing process
• Allow for various types of informed consent
• Providers address reasons for refusal of testing

7
Background

• 2003
• USPHS initiative
• Advancing HIV Prevention
• New Strategies for a Changing Epidemic
• recommends opt-out approach for prenatal HIV
  testing

8
Rationale

• Increasingly effective interventions to prevent
  perinatal HIV transmission
• Without medical intervention, risk of
  transmission is about 25
• With combination ARVs, risk of transmission is 2
  or less

9
Rationale

• Comparison of increased HIV testing rates during
  pregnancy using opt-out vs. opt-in approach

10
Comparison DataOpt-out vs. Opt-in

• Canada
• Provinces with opt-out testing reported 94 and
  98 testing rates compared to 54, 80 and 83 in
  provinces with opt-in policy
• U.S.
• States with opt-out testing reported 71 and 85
  testing rates compared to 25 and 69 in states
  with opt-in policy
• 
  
  MMWR 11/15/02

11
Purpose of study

• To learn about womens opinions on HIV testing
  and methods for obtaining consent
• How do women feel about routine HIV testing
  during pregnancy?
• Do women feel that special consent is necessary
  before HIV testing?

12
Methods

• One-page anonymous survey in English and Spanish
  to assess
• Womens opinions about elements of opt-out
  approach
• Reported knowledge about pregnancy and HIV
  transmission
• Amount of information available about HIV and
  pregnancy
• UMDNJ Institutional Review Board approved survey,
  cover letter and advertising flyer

13
Methods

• Target population
• Women of childbearing age (18-45), pregnant and
  non-pregnant women of differing HIV status
• Site selection
• Title IV/DTTA staff recommended sites with
  geographic and demographic diversity

14
Data Analysis

• Participant and site characteristics
• Associations among opinions, reported knowledge,
  site and participant characteristics

15
Survey Sites

• Albany, NY
• Casper, WY
• Chicago, IL
• Detroit, MI

• Hattiesburg, MS
• Mayaguez, Puerto Rico
• New York City, NY
• Newark, NJ
• Tampa, FL

16
Site Characteristics

• 6 community health centers
• 3 community health clinics with case management
  services
• OB/GYN clinic
• Support group
• Internal medicine/pediatric clinic
• Doctors office

17
Site Characteristics

• 6 urban sites
• 73 of surveys
• 3 rural sites
• 27 of surveys

18
On-Site Survey Distribution

• Women were given cover letter, notified of survey
  and asked to fill out questionnaire
• Secure survey box provided for completed surveys
• Site representative responsible for distributing
  and returning surveys to National Resource Center
• 857 completed surveys were analyzed

19
Results

• Participant characteristics
• Opinions on HIV testing during pregnancy and
  consent
• Reported knowledge on HIV transmission
• Associations between opinions, knowledge and
  participant characteristics

20
Participant Demographics
N 857
21
Participant Demographics
N 857
22
Participant Characteristics
23
HIV Testing During Pregnancy

• Do you feel comfortable being tested for HIV
  during pregnancy?
• Should HIV testing be part of a routine
  pregnancy check-up?

24
Sample write in commentsYes, HIV testing should
be part of a routine pregnancy check-up

• If you can stop transmission to the unborn baby,
  why not?
• Most of the time the moms have no idea that they
  can affect their baby or if they are infected
• For your baby!

25
Sample write-in commentsNo, HIV testing should
NOT be part of a routine pregnancy check-up

• Monogamous relationship shouldnt have to have
  testing
• Could be very upsetting
• May be an invasion of privacy

26
Consent for HIV Testing

• Do you think it is OK to test for HIV during
  pregnancy without getting special consent for the
  HIV test?

• Yes 44
• No 47
• Not sure 7

27
HIV Testing During Pregnancy
Comfortable with HIV
testing
Testing should be
routine
Yes
No
OK to test without special consent
Not Sure
28
HIV Status and Consent for HIV Testing
28
31
301
290
38
59
29
Characteristics NOT Associated with Opinions on
Special Consent

• Age
• Pregnancy
• Race/ethnicity
• Having children

• Reported knowledge
• Receipt of information
• Language of survey

30
Information Available

• Yes 59
• No 28
• Dont know 11
• Did not report 2
• Yes 55
• No 20
• Dont know 15
• Did not report 9

• Have you received information on the types of
  blood tests done
• during pregnancy?
• Was information on HIV included?

31
Information Available

• Is enough information about HIV and pregnancy
  available to women?

• Yes 45
• No 34
• Dont know 19
• Did not report 2

32
Language and Information
225
263
132
124
68
30
p lt 0.001
33
Knowledge about HIV and Pregnancy
34

Knowledge about Perinatal HIV Transmission
35
Knowledge about HIV
36
Reported Knowledge and Clinic Sites
37
HIV Knowledge and Demographics
38
Summary of Study Findings

• Vast majority of women are comfortable with HIV
  testing during pregnancy, and believe that it
  should be a routine part of prenatal care
• 47 of women felt it was not acceptable to test
  for HIV during pregnancy without getting special
  consent compared with 44 who felt it was
  acceptable

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Summary of Study Findings

• 41 of Spanish-speaking women answered 4 or 5
  knowledge questions correctly, compared to 68 of
  English-speaking women
• Spanish-speaking women were more likely to report
  that enough information was available about HIV
  and pregnancy

40
Study Limitations

• Opt-out is an unfamiliar term so survey could
  not elicit opinions directly on the opt-out
  approach
• Survey was not designed to or determine the
  acceptable form of special consent
• No direct causative associations can be drawn
  between opinions and reported knowledge,
  demographic or site characteristics

41
Conclusions

• Specific populations may benefit from more
  information
• Young women
• Spanish-speaking women
• Women who have never been tested

42
Conclusions

• Since most women felt that HIV testing during
  pregnancy should be routine, but fewer than ½ of
  surveyed women felt comfortable getting tested
  without consent, support and educational
  materials should be developed to improve
  acceptability of opt-out approach

43
Further Research

• Follow-up study to better understand what women
  mean by special consent for HIV testing during
  pregnancy
• Survey
• Focus group

44
Acknowledgments

• Funding for this survey was provided by the
  Health Resources and Services Administration,
  HIV/AIDS Bureau, Division of Training and
  Technical Assistance,Title IV Program to the
  HIV/AIDS National Resource Center at the
  Francois-Xavier Bagnoud Center

45
Acknowledgments

• Very special thanks to the---
• Women who took the time to complete the survey
• 9 sites and site liaison staff
• FXB research and data analysis team
• Sarah Dolgonos
• Linda Podhurst, Ph.D.
• Rianna Stefanakis
• Deborah Storm, Ph.D.
• Emily Zackin, MA

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• Questions
• Comments

47
Opt-Out Case Studies
48
Theresa

• Theresa is 28 years old
• 15 weeks pregnant with her third child
• English is her second language
• Theresas family recently moved to the
  area, Theresa is new to the clinic

49

• When Theresa comes to the clinic, the
  receptionist hands her a prenatal information
  packet
• It includes a list of routine blood tests
  performed during the first visit HIV is on that
  list
• The packet mentions that most of the tests are
  voluntary

50

• Theresa is seen by a nurse, who says
• I see this is your third pregnancy, youve been
  through this before. Did you get a chance to
  look at the information packet? Do you have any
  questions?
• Theresa does not have any questions, the
  information packet and HIV are not mentioned any
  more.

51

• Next, Theresa is seen by the doctor who goes
  over the information in the prenatal packet and
  says
• Lets review the things that you can expect
  during your pregnancy, and what we can offer in
  the prenatal clinic. Unless you decline, we will
  do the routine prenatal blood tests.

52
Jane

• Jane is 18 years old
• 20 weeks into her first pregnancy
• This is her first prenatal visit

53

• In the waiting room, Jane watches a video on
  prenatal care.
• The video covers information on HIV testing and
  mother-to-child transmission of HIV.
• The video clearly explains why the HIV test is
  important.

54

• The intake nurse mentions that blood will be
  drawn for routine blood tests.
• The nurse asks Jane if she has any questions
  Jane does not ask any questions or voice any
  concerns.

55

• While drawing the blood, the nurse explains that
  the standard tests include hepatitis B, rubella,
  syphilis, HIV, blood type and others
• The nurse tells Jane that she can decline some of
  these tests but they are all recommended in
  pregnancy

56
Mary

• Mary is 32 and 12 weeks pregnant
• Working professional
• Regular patient at the health center, which has
  an opt-in policy
• In the waiting room, Mary receives prenatal
  information packet which lists all routine blood
  tests HIV is on that list

57

• During the exam, the doctor skims Marys file,
  and says We have HIV testing available. If
  you think you need it, please sign the consent
  form.

58

• During the exam, the doctor tells Mary about HIV
  and the importance of HIV testing during
  pregnancy, and says that HIV testing is
  recommended for all pregnant women.
• The doctor tells Mary that she should sign the
  HIV consent form if she would like to be tested.